WHEN YOU LIVE with debilitating pain it becomes a matter of degrees: How bad is it today? Can I get up and walk? Can I get through a day of work? Some days are better than others. Some days it’s simply just hard to get dressed.
I’ve been living with pain for roughly 16 years now. When the pain first began, my doctors had a hard time figuring out the cause. Initially I was diagnosed with Lupus—an autoimmune disease that impacts joints, organs and other parts of the body. Happy to have something concrete to go on, I eagerly embarked on treatment. Little did I know that my insurance company would put me through another kind of pain, one I wouldn’t wish on anyone.
For the next four years, I was forced to try cheaper drugs than what my doctor had prescribed. I’d try one and when it didn’t work, I was forced to try another, and then another. Try, fail, repeat. That was my life.
That practice is called step therapy by insurers. Patients tend to call it “fail first” because they are forced to fail on the less expensive drugs first before the insurers will let them have the one their doctor first prescribed. Call it whatever you want; it really means blocking access to needed medication. And it impacts hundreds of thousands of patients who suffer from cancer, diabetes, epilepsy, glaucoma, autoimmune diseases, hemophilia, Alzheimer’s and many others.
As it turned out, I had been misdiagnosed, and finally, after those years of trial and error, and switching to another doctor, it was determined I had rheumatoid arthritis. You can imagine my relief at just knowing what it was that had been destroying my everyday life.
I was fortunate because my new doctor was able to enroll me in a year-long clinical trial for a biologic drug. And it was amazing. I began to get my life back. After that trial ended, my doctor and I had to try and replicate what worked and we figured it out. But again, my insurer said no.
This time, it was because I needed a dose higher than what insurance was willing to cover. I was told I had to either go down in my dosage or try another drug.
Finally, the drug I had used in the clinical trial received FDA approval and became available. Once again, my insurer denied it, this time because there wasn’t enough data to prove it worked. My doctor jumped through hoops, got a letter of medical necessity and, only then, was I able to get the drug covered.
It just shouldn’t be this hard. That’s why I’m asking lawmakers to pass pending legislation that would put prescribing back in the hands of doctors and make sure patients are on the right medication to properly treat their condition in a reasonable time frame.
House Bill 492 and Senate Bill 551 put new guidelines in place that will give doctors more control over the prescribing process and a convenient appeal process to override step therapy for patients. It also will keep patients who have previously tried and failed on a medication from having to go through that process again, even if they change insurers.
My story is the story of so many others like me. Step therapy is increasing steadily. As of 2016, more than 75 percent of employers report offering employees plans that use step therapy.
It takes a lot of energy to battle these diseases. No one should be made to endure additional pain and stress to fight for coverage for the correct medication so that insurers can maximize their profits. We’re already fighting to remain productive members of our communities, at work and at home.
Chantelle Marcial is a volunteer patient advocate with the Global Healthy Living Foundation, a non-profit organization whose mission is to improve the quality of life for people with chronic illness. She lives in Boston.